"I AM"- are the two most powerful words in the dictionary because the ending determines your destiny….so join me in my fight against PD to make sure that everyone who suffers from this chronic progressive degenerative disease can develop the courage to shout to the wind- I AM Fierce and Courageous ….

Category: Parkinson’s Diagnosis

“stop focusing on what happened and start focusing on what’s going to move you forward.”

We have come a long way in the way we think about many neurological diseases since I first became a physician. 25 years ago we had a limited number of medications to treat Parkinson’s plus the thinking was that patients with this illness were doomed to a life fraught with physical limitations that were out of the control of the individual who simply had to accept his or her fate.

Now we know that although there is still no cure, there can be life after PD. We have the power to control our future to ensure the best possible outcome.

Although many of the tools and techniques of rehab to aid patients with PD are not entirely new and in fact been around for decades, the expectations of patients and doctors has shifted considerably. There is now a greater emphasis on recovery and maintaining function because contrary to previous beliefs… The brain is capable of remodeling itself – However this does not happen overnight nor without hard work and will power. The best outcomes for those living with PD come by from earlier rather than later treatment introduction as well as rehab. Even in early stage of PD when patients just begin to notice gait deficits studies show that there is a dramatic decrease in cadence and stride that can be improved and maintained if physical therapy begins early before real problems like falls occur. The more people with PD practice their therapy regimens (like cycling, walking, boxing, dancing, tai-chi, swimming) the stronger and smoother the new brain pathways developed will become. These therapies are not confined to traditional ones but also those which are non-traditional like singing and painting or sculpting. Also programs like BIG & Loud can be of great benefit.

Thus, as soon as one is diagnosed one should talk to their physician about referring to physical therapy, occupational and speech therapy. Part of the conversation should include discussing daily or weekly activities which will help to maintain and improve function. Even when wheelchair bound one can do tai-chi or laughter yoga to help guard against depression and decrease rigidity and pain. The goal is to stimulate new pathway development and strengthen the connections which are becoming loose. But the rehab should not only include physical activities but also mental ones since PD affects memory as well. Of course there is a belief that exercise can improve and delay memory loss but actively engaging in mental activities like learning new skills, playing games, solving puzzles, learning new languages, as well as socializing will be much more beneficial.

But, before you go begin to recovery, you must first address your own emotions. The reality is that until it happens, most of us take for granted all the little things we are able to do without giving it a second thought like multi-tasking, being able to get dress, able to tie our shoes, brush our teeth, feed our self, cut our food, etc. we don’t ever think what would happen if I were to lose our independence suddenly and unexpectedly. How would we react? What would we do? How will we cope? The notion can be extremely traumatic especially for an active independent person. When we get a diagnosis with PD is not uncommon to feel out of sorts, lost, depressed because we are grieving for loss of self-wondering what our next move will be, what our new place in the world, or role in our families will be? We wonder what the future holds for us. To make matters worse Parkinson’s also wreaks havoc with our emotions making us anxious, and depressed. If we don’t get a hold of our emotions and seek medical care which may include counseling, these can ruin our life leading to isolation, worsening depression, fatigue, sleep, and apathy. These emotions if unchecked and untreated can stand in the way of a recovery.

3 Sure ways to better outcomes and happier you:

First step is self-awareness of problem – one can’t solve a problem without first admitting there is one. Get diagnosed. Then work on what needs attention in your life at the time-ask yourself how I am going to do my job or fill my responsibilities if I am not well? So place yourself at top of to do list. This means accept diagnosis and start treatment.

Second, find a support group– people you can open up and also will be there when you need help, this includes looking for financial help if needed, plan for future.

Third, strengthen yourself by embracing the disease and putting a plan together to exercise, eat right, sleep right, go to counseling if needed, follow through with doctors and tailor your own therapy to fulfill your needs. An Avant guard way of approaching therapy is called progressive task related training. For instance, if having trouble using limb to eat work on ways to improve function and use of that limb getting right utensils, taking right meds, etc. The goal is to promote autonomy for as long as possible. This also includes educating yourself and others about your disease. Make short term, medium term and long term plans to accommodate for your new needs and life style. This includes preventing falls which frequently occur with PD -so should have some balance training like water therapy which I have found to be the best solution for this problem.

In the past, one of the biggest challenges non-neurologist or/and non-movement disorders physicians have faced in diagnosing PD has been the lack of uniformity in disease presentation. While variability in response to treatment has been a challenge at times for those of us in the field of Parkinson’s disease. Although, no two individuals are ever really alike in the last decade,,we have unveiled many similarities in presentation and treatment response across different subgroups of Parkinson’s population (i.e. young onset vs. older typical onset; women vs. men; various ethnic groups) which can help guide treatment Plan. Of course, we are always pushing the envelop of neuroscience and knowledge to find that unique key element that can leads us to a more precise diagnosis and treatment of those living with PD.

Recently, as you might be aware, everyone seems to be talking about “individualized medicine” but although we have been attempting to get more precise data and information by studying subsets of PD population through various means like the Large- PD geneticstudy spear headed by Dr. Mata and supported in part by Parkinson’s Foundation previously known as PDF; the reality remains that we simply do not have the correct tools to pull such a feat. We are not able to match particular medications with specific mechanisms of action with underlying PD causes at this time. This is the level of medicine that we would all love to achieve in the near future. In the meantime, we can all do our part by participating in genetic studies, research trials,pregnancy registries- because no state or government registry exists for PD meds-you can send your information to the pharmaceutical companies makers of your own PD medications and ask your physician to keep a log which you can provide and update.

So until we have the right tools for the trade to really be able to provide “individual medical care,” what can we as patients and caregivers do to ensure that we or our loved ones receive optimal care?

First, we have to convince our government and healthcare providers (i.e. insurances) that in order to achieve optimal care one must be intimately familiar with the subject they are treating. This degree of knowledge only comes from having continuous rapport with the patient which develops over time- i.e. continuity of care is vital!

Once diagnosis has been confirmed – what drugs will work best for what I have?

Are there any drugs that are more likely to be beneficial or more likely to cause me problems?

This is where having an open communication, good rapport, and a long history with your physician that would greatly influence the choice of medication and treatments offered to you. For instance, if you already have tendency to gamble, love to shop a bit more than others, or have some underlying ocd’s (obsessive compulsive traits) perhaps adding medications like Mirapex may not be the best choice. Likewise if you are a ‘collector’ by nature dopamine agonists which increase pundding ( hoarding in a systematic organized fashion) may not be the route unless clear supervision is provided. Also if you already experience daytime sleepiness may take into consideration before starting dopamine agonists unless you also add medications like Provigil and Nuvigil and other stimulants like Adderall to counteract sleepiness and stimulate alertness.

In the same manner we should be aware of potential adverse reactions. All meds have side effects and just because it is listed does not necessarily mean you will have – however this is where knowing yourself and something about gender is beneficial –

We know that in general women have more sensitivities, side effects and adverse reactions to medications; may require much lower doses than male counterparts with similar symptoms.

How are these meds going to impact my other medical issues (e.g. diabetes, high blood pressure, migraines, etc.) or interact with my other medications ( make them to be ineffective, or increase their dose and thus ?

How will the medications affect my daily living? ( not just in terms of side effects but dosing -2 times vs 5 times a day?)

Is it going to interfere with becoming pregnant or impact my pregnancy?

Will these meds alter my menstrual cycle?

What is the cost? Although this is extremely important this should not be the limiting factor once you consider the fact that a lower costing medication can result in multiple sick days, doctors’ visits or hospitalizations vs. a higher cost which will provide better quality of life and decrease medical cost in the long run.

In the end although we have a slew of medications which have proven to be efficacious not all medications are an ideal fit and some should be avoided based on our own personal medical history as well as that of our family. One way that we can begin to help ourselves and our doctors to better choose the correct treatment plan is perhaps request that we have some genetic testing. Since more than 75% of individuals have variations that determine how our bodies respond to and process drugs ( all types, recreational, prescribed and over the counter) some of which can lead to serious adverse reactions requiring hospitalization as it did me recently where after years of taking Azilect and Neupro I developed severe arrhythmias and severe malignant hypertension causing transient ischemic changes ( mini-stroke). According to ones site serious drug-related effects are the 4th leading cause of death in the U.S. One way we can added information is through a simple genetic test YouScript which involves a painless check swab which then shows your own unique drug-processing genetic characteristics. (several companies perform this- e.g. Inverson Genetics, Genelex

This is a classic picture of one of my all time favorite comediennes with a well known skit. Every time life comes at us fast, this is what I am reminded of. Sometimes no matter how hard we try, we have to swallow some of the stuff coming our way in order to keep moving forward. As I have been having more recent medical complications due to my Parkinson’s disease and medication side effects, I again was reminded of Lucille Ball. I like her initially was thinking in the last few months that perhaps I was on the other side and I could handle going back to working as a physician despite my PD (easy- peeze-no problem). However, as life demands have increased followed by one thing, another and another, I have begun to feel like things are speeding up on my own conveyor belt causing a big pile up, making the juggling and keeping up a bit more hectic and demanding. This does not mean I am giving up on practicing neurology again or stop my advocacy.

But, I have begun to think more about those of us who live with chronic illness and have a job, trying to maintain one, or are looking for ways to earn a living with a different career after PD diagnosis.

As many of us have learned, it is not always possible to keep working at previous capacity or even at any capacity when illness strikes particularly in the face of continuous fluctuations especially if sudden or unpredictable, as mine has been lately, or as we approach advanced stages and begin experiencing motor fluctuations such as dyskenesias.

According to a British study of 308 Parkinson’s patients, 82% had ceased to work after 10 years of disease, 57% retired early like me due to disease.

We all know life with a chronic disease like Parkinson’s is a constant juggling act. We have to learn to balance our health along with family, social, and work responsibilities. This can be a feat for many.

When we first get diagnosed after the initial shock wears off and reality sets in, we have to consider our financial resources to be able to continue providing not just for those who depend on us; but more importantly for the increasing financial needs that come with being chronically ill.

So as you contemplate your future financial stability, you must start making concessions for a time when you are no longer able to carry out your present job duties or perform any standard job. Think of the worst scenario and build from there but without going to panic mode or being paralyzed by anxiety and fear.

I am sure you will begin to wonder if you should share your diagnosis with your boss or fellow employees.

First, I have to say candidly and with all due respect-it is no body’s business unless you want it to be. If your job is unaffected – may not need to disclose. But if you are having to take off more, or performance no longer the same as it was prior to symptoms of PD, this maybe an indication of the need to discuss diagnosis sooner rather than later. If you are self-employed of course you have more autonomy. You have more flexibility of decreasing hours; keeping in mind as someone who knows first-hand about running a business when boss is ill productivity and quality inevitably begins to decline unless there is someone else with vested interest to maintain. Also when you are the boss, your responsibility to those you employ supersede your take home, this means that when earnings decrease only person affected is you ( particularly at the beginning unless you curtail number of employees and/ or shut business down).

Second, take care of yourself and your health by eliminating undue stress by asking employer for things to make your life easier. Taking more breaks, coming in late once a week, having the appropriate tools to make job easier, higher chairs, work from home, etc. of course the better the worker and more indispensable you are. Subsequently, the more likely to have leverage and demands (needs) met.

Third, prepare yourself mentally about the possibility of losing your job due to PD. Few ways to be prepared for future is to continuously learn new skills (I have become a writer), update your resume, look for jobs that allow you independence, flexible hours, work from home such as telecommunications. The key is to find a new passion. We all know that when we are actively pursuing what makes us happy we infuse joy to others and work is no longer so stressful. After all you have the keys of your destiny to make the right accommodations to help with your disease.

But just because its fun it does not mean it will necessarily be easy. After all work is work and can exert a toll on our bodies. for instance, even though I very much enjoy traveling and speaking, this requires a lot more dopamine than when I am just relaxing at home.

Fourth, ask yourself truthful questions like does my irritability make it difficult for others to work with me? Could my cognitive slowness cause a serious problem at work?, do my tremors get in the way of performing daily activities at work? If you answer yes to any of these questions, you may need to talk to your employer about finding ways to avoid or diminish these symptoms so you won’t lose your job. Perhaps, it may be wise to think about career rehab or alternate jobs, as I mentioned earlier especially within your place of employment. Does your boss need meticulous work behind the scenes? PD patients have been found to be more capable of performing these types of tasks especially if repetitive.

Fifth, do not underestimate your mood- particularly for us women with PD it was discovered in similar study as above that women are more prone to leave the work force earlier due to depression, anxiety, and overall general poor quality of life. We as women also have to recall that we have more stressors such as being caregivers to elderly parents, children, grandchildren, and many times have less financial resources available to us. remember to enlist help of a team of professionals to help planning for future. these include social workers, estate planning lawyers and financial planners.

Finally, You may require to plan for both long and short-‘term costs of medication, home adaptations, insurance and other health care related needs’. This also includes planning or at least thinking weather or not you might apply for social security disability or early social security which can affect retirement plans.

For more information go to :PDF link below to find financial and legal advice/support.

Have you ever wondered why some people seem to always get better with any medication or treatment given; while others have the opposite effect no matter what the treatment therapy is?

Well, you have heard of the “placebo” effect, I am certain. Today, I will discuss the “nocebo” effect…

The term nocebo in Latin translates to English as “I shall harm.” this is in contrast to the commonly known placebo effect in which any type of intervention whether medical, surgical, or homeopathic results in a perceived beneficial response not directly attributable to the mechanism of action of the intervention prescribed. I along with other scientists and clinicians suspect that this harmful effect (opposite of placebo) has been largely ignored and overlooked for many years, particularly when it comes down to treating patients in a healthcare setting.

Both of these outcomes are directly linked to a subconscious mind effect related to our expectations of benefit/ improvement/ as well as side effects and complications with any given treatment.

We tend to feel better and do better when we like the doctor treating us, the setting of our care, as well as if we believe there is merit to the treatment. This is particularly true when participating in a clinical trial – since only highly motivated individuals are prone to partake of these investigations especially as it relates to more invasive studies like DBS, gene therapy, focus ultrasound, and so forth. this of course always begs the question of how much benefit MUST we see before we know it REALLY is beneficial to the majority? Because invariably the mind is a powerful instrument that can render someone completely paralyzed and immobile or have the opposite effect…some may even call it faith. Whatever this intrinsic mechanism is (which some studies have alluded to PD patients having greater faith compared to other chronically ill neurological patients); it usually manifests in improvement of motor symptoms. This is extremely important in studies that rely heavily on self reporting of symptoms. The initial believed improvement could be a figment of the mind, wanting and hoping to have real relief. But, what happens when the study is unmasked and this type of patient find out they were not on treatment? the same holds true for those who believe everything will go wrong and have a slew of side effects on placebo. There is an unraveling- patients may than underreport improvement or exaggerate positive response either way skewing the data.

However, where I have witnessed the biggest problem in outcome in treatment is in clinical practice. There is such a thing as having “too” much knowledge or anticipatory effect. If one goes into a clinic already believing there is no treatment possible to help symptoms, that no matter what you will experience side effects and adverse events or that your physician is not in touch with your condition- this will automatically create a nocebo effect and I guarantee there will be no force or treatment to make you well!

This is why I always highlighted the positive effects of the medication and underplayed the negative possibilities and encouraged patients to not readthe entire list of possible side effects before starting a new treatment. I rather recommended trying it first with an open mind. This also applies to getting advice from others. when people hear of great things with a particular treatment they are willing to try more readily but if they constantly hear negative reports the outcomes are mostly going to be disastrous. remember that every individual is unique as to their response of medications, systemic illnesses, and overall genetic and cultural composition so we can not really expect to have same treatment across the border although there are some generalizations across gender and ethnicity. Second, this fact is the reason why I suggest everyone follows up with a physician /healthcare provider they absolutely trust because their faith in this person will subconsciously alter the response to care for the better.

So next time you participate in a study, ask yourself the reason for participating?

are you trying to please your physician?

are you desperate for good results?

did you feel coerced to participate?

are you just wanting to help science?

do you have preconceived expectations from what you read or heard?

If you are honest with yourself, these questions will help you decide when and how to participate and have the best outcome…

likewise before you go to the doctor, ask yourself these questions?

what do I expect from therapy?

can I talk to this physician?

does he/she listen to my concerns?

do I trust this physician? or do I have to consult with others? get second opinion?

have I heard negative things related to my illness or medications?

am I going to follow through with directions/recommendations?

We must find a balance between being able to advocate for ourselves, acquire knowledge about our disease and treatment without jeopardizing our future outcome and limiting our treatment options.

With practice and keeping above scenarios and questions in mind – you too can have a better quality of life and be a better research participant without losing faith.

As we continue to raise awareness for Parkinson’s and work together to #EndParkinsons, there are a few things I like to talk about. First, in order to have the best outcome with lower disability while living with PD is having a team of health professional to help guide you. The quaterback should be your neurologist preferably a movement disorder specialist or minimally someone who deals with Parkinson’s disease on a daily basis. However, having a great team at your disposal will be of no use if you don’t make most out of your team. Yes, this means going to the doctor on a regular scheduled basis not just when we feel like it.

I know some people advocate patients having complete autonomous control of their health which includes choosing when they need to go or not to go to the doctor. We need to have both – we must be able to have accessible doctors when we need them as well as follow their scheduled appointments. I know having a chronic illness especially when not well controlled makes it extremely painful and tiring to continuously visit your physician and other health provides, to say the least. Yet, this is the time we need them the most.

As a physician and patient, I more than most understand both sides completely especially how expensive, time consuming, and down right difficult it is at times to see your physician. But, I also know that we even as a physician are not the best judges of what is going on with us and we need an objective opinion or set out of our situation to see the whole picture clearly. I think this is why sometimes we end up hospitalized, in the ER, or having more side effects than we should.

For instance, I am sitting here with walking pneumonia and unable to talk on a boat load of medications having thus far avoided hospitalization because serendipitously I was diagnosed in time, all because I am schedule to travel to be guest speaker. If I had not had commitment of speaking engagement I would not have been so forth coming in going to seek medical attention and probably I would have ended in hospital.

So, if you are like me and is having now problems but just had an appointment less than a week ago or not until 3 months down the road, what do you do? A few years ago, you would just have left a message and wait patiently by the phone or perhaps had to go to ER if symptoms bad and no qui response from the physician/nurse practitioner etc.

however, we are living in a social media age. Email, Twitter, text messaging, FaceTime and patients portal are just a few of the methods available for prompt communication wih your providers. They can also help coordinate care and dispel concerns. Plus, you will have the benefit of having a permanent record of the exchange. However, using these methods requires some saviness on your part.

first, you must discuss with your providers what is their preferred method of communication. For instance, I can call or text my neurologist anytime I need. Some prefer to have their nurse or staff sort through messages.

next you need to be aware when or how often they check these messaging devices. If they only do once at the end of day- especially if they do less frequent you might need to still call the office as I do when I need something answered more promptly.

of great importance is knowning your providers emergency protol..which at least in this country usually involves dialing 911 first.

If you happen to live far away from your physician especially f in another state or country…discuss tele medicine or use of skype as communication.

Once, you decided on form of communication – the most important thing is sending a concise message focusing on a clear question or issue. Let them know if you need a response by a designated time and always put a subject line when sending email or text. If sending copies of other physician reports etc make sure your links are correct and go directly to subject matter .

Parkinson’s affects our insides and outsides and although commonly labeled as a movement disorder it has many more non -motor manifestations which can wreak havoc in our daily life’s . Some are cumbersome and embarrassing while others can be downright difficult to bear and live with.

Since dopamine, the major neurotransmitter involved in PD abounds outside of the brain it is expected and of no big surprise to see problem areas arise outside of the nervous system, particularly when it comes to control of the autonomic nervous system which regulates temperature, pain, glandular secretions, and controls all involuntary functions of our bodies like bladder emptying, sexual function, and peristalsis (bowel movement).

Many people outside the neurological community may not be aware of the severity and impact of having an autonomic system which has gone haywire. Thus, presenting some of the greatest management problems to date due to lack of disease modifying treatments. The autonomic dysfunction in PD can be manifested in a number of ways presenting with various signs and symptoms involving the skin and appendages such as our hair and nails. For instance, when I first began to have symptoms of Parkinson I noticed a change both in my skin and nails which at first I assumed were due to my thyroid cancer. However, as my thyroid problems got treated and under control, I still experienced dry patches of Skin in the most unusual places- behind my ears, fortunately no one could see but I knew it was there.

Try as I might to moisturize, wash with shampoos containing Zinc and selenium, the patches remained stuck unable to be peeled away. To my amazement and surprise when I recently switched to Rytary I noticed that the patch of dry scaly skin had disappeared completely from one side and significantly diminished on the other. Such insignificant small victories that can make someone happy. But, much to my dismay about a week ago I began noticing a large scaly patch smack in the middle of my forehead – resembling a sunburn that is peeling away, I rather go back to the patches no one could see. Of course I have already discussed elsewhere the increase sweating, I like others have experienced. So I began thinking about all the changes that we experience with Parkinson’s some visible while others not so much and decided that a visit into skin changes( alterations) caused by PD, it’s medications, as well as those caused inadvertently by drug delivery methods and immobility merited my attention and a bit of discussion. Skin alterations are not commonly recognized by those outside of neurology field as I mentioned earlier yet; it appears that autonomic dysfunction affecting the eccrine sweat glands are involved early on in the disease process when compared to controls. There appears to be decrease innervation of blood vessels and to erector Pilli muscles (important in regulating temperature).

Common skin conditions:

Sialorrhea– increased drooling

Hyperhidrosis– increased sweating

Malignant skin lesions– most common is increased melanoma but other skin cancers can occur.

Seborrhea-greasy skin with limp oily hair

Seborrhea dermatitis – accumulation of sebum (oil) is the cause of seborrhea usually seen in hair, and in the forehead as well as in folds of the nose. When this becomes chronic it leads to dermatitis (inflammation of the skin- red, itchy, flaky). Skin and hair need to be washed routinely and use anti dandruff shampoos; however once dermatitis sets you may need to consult a dermatologist to treat with topical steroids. This dermatitis can affect the eyes as well causing small patches that get into the eyes and eyelashes. Inner parts of eyebrows eyelids and ears can be affected as well as chest area, under skin folds like in groin, breast and axilla. Solution to face and scalp seborrhea is to let the dandruff shampoo run over your eyes closed and wash away gently. Seborrhea is more pronounced when disease is most active.

Ways to prevent & Treat Seborrhea Dermatitis:

Wash face and skin with warm water using a mild soap (e.g. unscented glycerin soap) and rinse with cold water

If you have severe crusts or scales in your scalp try rubbing a mineral or olive oil several hours prior to washing hair

Medicated eardrops to treat ear canal flakiness

May need a short term steroid based cream or ointment if itching and redness is severe. (a home remedy I often tried on my patients before steroids is application of Crisco lard on scaly patches- just don’t go sit out in sun or get near fire)

Drug Therapy & Skin Changes:

Melanoma – increased risk in PD population with all dopamine and dopamine agonist especially with levodopa. Constant vigilance is of the utmost importance. See elsewhere in my blogs as to risks and diagnosis of these.

Skin sensitivity– this is something that is important to note as well since all of us with PD appear to have hypersensitivity to the sun specially when taking Mao-inhibitors like Azilect. Make sure that you protect your skin, wear cool clothes and hats and stay in the shade if possible do not go out in extreme heat particularly if you are elderly because as we age we tend to have increased skin sensitivity and fragility.

Drug side effects–

Amantadine– an oral anti flu medication used for Parkinson’s treatment particularly for tremors. However, this medication can cause skin changes known as Livedo reticularis (purple stria) in the lower extremities, it can affect the trunk as well as arms but less commonly seen. This rash is asymptomatic and usually comes up anywhere from a month to 4 years later on average. The good news is that this discoloration of skin resolves completely with cessation of drug intake.

Apomorphine– is a dopamine agonist used for treatment of acute and intermittent ‘off ‘episodes with long standing drug therapy treatment for PD. This medication can be given IV infusion or by subcutaneous injections these can lead to skin necrosis (dying out skin ulcers) at site of injection; also can occur years after use. Make sure always clean area before and after and have a nurse from pharmaceutical company train you on how to use properly to decrease potential for side effects.

Transdermal drug delivery– Neupro patch, Exelon patch, Selegeline patch. These reactions can range from mild irritation to severe inflammation, pain, whelping, itchiness, and burning. One way to decrease this sensitivity is washing area thoroughly before use and drying it well; also rotate sites recommending using same site no less frequent than every 3-4 days.

Steven Johnson reaction/syndrome– serious idiopathic life threatening skin rash which can be lethal fortunately extremely rare. It is usually to a medication or an infection- begins with flu-like symptoms followed by a painful red or purplish rash that spreads and blisters. Go to ER ASAP if have this…but in all honesty not seen this with PD.

Pressure sores- As, PD advances many of us become immobilized forced to sit in wheel chair or in bed 24 hours a day. This along with the already decreased mobility of disease and increased rigidity along with moisture of chronic sweating and of urine incontinence can lead to pressure ulcers particularly in the heels and buttock areas due to pressure, shear, moisture and friction of skin and blood vessels. Need air mattresses, heel booties, constant supervision and turning by a caregiver, changing sheets and clothing, dressing in cool garments, maintaining room temperature cool and if going to maintain in disposable undergarments need to change every 2 hours at the most and wipe are clean from sweat and dirt, bathe in bed frequently (daily). If urine incontinent consider placing a catheter less risk of infection. This is what I did for my grandmother and never developed any sores or ulcers because these can get supra-infected with ordinary common organisms easily like staph infections. At the first sign of skin break down begin treatment with medicated gauzes and talk to nurses and doctors caring for patient ASAP to avoid progression, hospitalization or death.

Fungal infections-Risk of fungal infections increase in patients with PD who are incontinent of urine. These infections look like rashes in the perineal area and groin. They are moist, itchy, red and looks like satellite as infection spreads outward, sometimes they are white like babies ‘cotton-mouth/thrush’ this risk may increase with diagnosis of diabetes ( which we as Pd patients are at higher risk). Treatment consists of anti-fungal medication topically like mycostatin ointment. One way to prevent is as I said above maintaining dry are but also apply 1-2 times a week some Desitin (or other baby rash ointment with zinc) to groin area to help with moisture and decrease this type of infection.

Fulvio Capitanio (Spain) is an economist and ITC manager. He was diagnosed with Parkinson’s in 2007 and retired from his job in 2009. In January of 2008, with a group of PD friends he met over the Internet, he started an online organization called “Unidos contra el Parkinson” (together against Parkinson’s disease) at http://portal.unidoscontraelparkinson.com

Since both my mother and grandmother have been found to have brain meningiomas, I have begun to take a very serious look at this matter. My search has lead me to find a few cases of meningioma – benign brain tumor arising from the lining covering of the brain (the meninges) presenting as reversible Parkinsonism. However, my concern is the relationship between PD and an increase risk for occurrence of meningioma’s of the brain after PD diagnosis.

My grandmother as you might remember had Parkinson’s disease which began in her late 60’s. She had good response to PD meds for many years but then began having uncontrolled bladder issues first believed to be due to PD but the symptoms were out of proportion to disease state. It was then thought that the problem was due to Diabetes. Then came the increase falling and worsening vision. This continued until one day she suddenly developed hemiparesis and seizures which led to the discovery of an extremely aggressive meningioma of which she died of.

My search has lead me to a possible link of an increased incidence of ‘benign tumors’ (non- aggressive and normally do not spread to surrounding tissues; although they can be serious and life threating) with PD, this according to a large Taiwanese PD study. The incidence appeared to be an increase of 2.2. Furthermore, the incidence of benign tumors was higher in women with PD compared to women without PD especially in those over 50 years of age. However, the problem is that they never mentioned which ‘benign’ brain tumors?

The most common ‘benign’ brain tumor in adults are pituitary adenomas after gliomas, meningiomas, and schwannomas. So it would stand to reason that some of these benign tumors are indeed meningiomas.

What does this all mean for us?

3 things:

Meningioma’s could be a possible treatable cause of Parkinson’s disease (parkinsonism)- these can present anywhere in the brain. Hence, the importance of obtaining an MRI of the Brain when first diagnosed. These occur more commonly in women ages 30-70; so YOPD women should always look, as any other PD patient, look at other treatable causes.

Risks are:

Head injury (controversial)

Increase in progesterone (post- menopause

Neurofibromatosis type 2 (genetic disorder)

Exposure to radiation

2. Meningioma’s are a possible increased benign brain tumor in PD patients especially in women. Therefore, it is important to keep in the back of your mind and discuss with your physician if new symptoms arise especially if not responding to PD medications or occurring out suddenly or out of frame with expected PD course. This is a time to have a repeated MRI/CT of the Brain. MRI is recommended because they usually begin to have calcifications or changes in the bone and arise in areas where there are a lot of bony structures making it easier to overlook. Because these grow very slowly over time usually they present with gradually developing symptoms.

Symptoms: the hard part is that some of these symptoms are part of PD – thus we have to remain hypervigilant especially when not obtaining the desired affect from medication. (Not responding well)

Blurred vision/loss of vision/

Weakness in arms or legs

Numbness

Speech problems

Headaches

Seizures

(increased bladder/bowel function due to swelling when there is swelling of the brain)

3. Because benign brain tumors incidence has been reported to be increased in PD patients – until we have more defining studies even when all seems well maybe worthwhile to discuss with your physicians about an updated brain imaging to make sure some of the slow growing treatable tumors don’t sneak up on us. Furthermore, those of us who like me are LRRK2 carriers might be also at higher risk of another benign brain tumor a glioma.

Now, for a woman that was once proud of her brain it has been a big blow to watch my brain shrink since this disease took over me along with the realization that I may be at higher risk of having a brain tumor due to my genetics and family history. But, I will persevere and continue to fight and educate others in hope of a better tomorrow for all of us.